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  1. #11
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    Hello

    I had a NT with 2mm, T21=1:11, T13=1:33, T18=1:39 and PAPP-A 0.11. My baby was below the 5th percentile for growth with very little brain and I had the Amio. I had to wait for the Amio because I had a huge bleed at 8 weeks and the Dr thought my risk of miscarriage was too high for CVS. The amio was fine but you are told to rest afterwards so plan a few days of no lifting and not going to work if possible. One very 'helpful' midwife told me of the phone not to be surprised if bub was not alive at my amio scan so that scared the life out of me. We got the FiSH results within 24 hours and they were positive. I was the 1:11. We felt gutted as it took 18 months to get pregnant and this was a much wanted baby. At the hospital the doctors discussed prognosis with us. The baby was several weeks behind in growth. The placenta function was poor. I was not expected to make it past 28 weeks. And the baby has T21. We decided not to continue the pregnancy as our baby would most likely not be born alive and by prolonging the pregnancy it wouldn't change the outcome. It was the hardest decision we ever had to make and I still wonder what if. My little girl was born at 17 weeks. Most of the ladies I have met here have had a positive outcome, some with worse results than mine so don't despair. It could be that everything will be fine. The worst part really is all the waiting. Things I did learn about PAPP-A is it can be the result of assisted conceptions, some women also have naturally low levels and sometimes it is a result of restricted growth, i guess what I am trying to say is it is not always T21. You still have a 149:150 chance of everything being fine with bub so try to remain positive until proven otherwise. We will be thinking of you, what ever happens. Good luck.

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    Karamc  (15-04-2013)

  3. #12
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    Hi Rose87,
    I had a very similar situation to you with my DS. Fantastic NT scan, were told everything looked great, then 2 days later got a call from OB to say my bloods put bub into high risk category for T21. My risk ratio was 1:64. hgc .33Mom Pappa 1.5.

    I was like you and wanted to find out as much info as I could and found a great deal of support on this very site! My husband and I chose to have the amino. The amino itself was not as bad as I had built it up to be, but you will need to rest after it for a couple of days so call in all of your babysitting favours from loved ones.

    Our amino came back negative for T21 and I delivered a 6lb baby at 39 weeks. I didn't develop pre eclampsia or go into early labour, but have been told that his low birth weight was likely due to the low Pappa.

    I hope that your amino goes well as well as the rest of your pregnancy! If you've got any other questions just pm me.

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    Rose87  (18-04-2013)

  5. #13
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    Just letting you know that I went through Sullivan Nicholades (sp?) for the blood test here in Townsville ($1250 and results took about 1 week), the people there hadn't heard of it, neither had my doctor, I informed everyone about it - but it was still available here, they just hadn't quite heard about it yet. If you want it, give them a call directly to see if it is. If you are set, that's fine. Good luck.

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    Rose87  (18-04-2013)

  7. #14
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    Hi rose87,
    Just thought I would let you know that I went through a similar situation. Had a DS and when he was 1 yo then fell pregnant with our DD. Scan odds were 1:117 for her, a big shock. We did the amnio, results were fine. Procedure itself not really painful, just be prepared for a really big needle or don't look at it being done! Rest afterward, take the day off work. With our next bub, due any day, we got a fairly low probability of downs etc but decided to do an amnio anyway. Basically, our decision was based on the previous procedure being so easy and that we had made our decision regards what to do with the test result prior to getting it.
    By this I mean that we knew what we would do if the result came back positive. I would recommend you and your husband make the decision prior to knowing the result so the decision is made objectively, as much as is possible.
    Anyway, just food for thought. Good luck for the 17th. I found the waiting period the hardest.
    all the best to you, xx
    ps with the amnio you usually get a preliminary result after 48-72hrs as long as they get enough fluid, about 11-14mls. We got this with our first amnio but he couldn't get enough with the last amnio so we had to wait the full week. Just FYI.

  8. #15
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    Sandfairysam - I'm so so sorry for your loss and for everything you have been through. Its truly not fair. I am incensed that the midwife actually said that to you over the phone - what a terrible thing to say, and in such a callous way. Thank you so much for sharing your story, you are much braver than I could ever be.

    spectea - I'm really glad that everything went well with your amnio procedure and that everything turned out great. That is fantastic that you went to term, even if bub was a little on the smaller side - as you said it is most likely due to the low papp-A, but they catch up in no time at all and you wouldn't even know by the time they are toddlers!

    kimberlina - That's great that they offered it where you are! Unfortunately its not available here just yet - they are working hard on it and I suspect it will be offered within the next 6 months or so. If we ever had to cross this bridge again we would definitely consider it.

    Karamc - Thank you for sharing your experience. I'm glad that your results were all fine We have always agreed on the course of action we would take if our results were not good, so we are prepared with that decision if it comes to that. I'm trying to be optimistic for a change (I'm always the opposite) and trying to look at things objectively - that the odds are still in our favour, that my blood work is not as bad as what it could be, even if it is wonky, and that when all is said and done this is completely out of our control. My FIL made a point yesterday by saying that if you can't change the outcome, why stress as though you can. Its perfectly normal and acceptable to worry, but only so much as it just takes over your life. We have a beautiful 2 year old DD who brings us immense joy and who needs us to be strong and continue with day to day life. This has helped us get through so far. Hopefully our FISH results will be conclusive enough, I am a little terrified that they will tell us the opposite, but again, its out of our control. Thank you again for your well wishes and advice

    AFM - I had the amnio yesterday morning. I had been working myself up about it for the last fortnight. The OB that did the procedure does about 3-4 per week and has done for many years, so he is very highly regarded. He explained the risks/process and was trying to make sure we were 100% certain thats the way we wanted to go. He was very gentle and reassuring and tried to take my mind off things by asking me questions about where we live, our daughter, etc. I'm not the least bit afraid of needles but I must say that I found it quite uncomfortable when it pierced the muscle/wall of the uterus (but that's to be expected). It was over fairly quickly and I was able to lie down and rest for a while before we went home. We pushed for the FISH results, although the OB was concerned that it would add to our costs, but we would have paid anything to have them back a little sooner.

    I have been virtually immobile since yesterday morning. I'm probably taking the 'rest up' advice a bit too literally, but I don't want to take any risks. My amazing husband, who I can't be grateful enough for, has been looking after us ever so well. Our beautiful DD senses that I'm not 100% and has been handing me her pillow pet and teddies and saying 'night night', to make sure I rest and keep comfortable. I feel terrible for not being able to play with her and pick her up but I'll make it up to her when this is all over.

    We're now just waiting for the call with our (hopefully) conclusive FISH results. We are also finding out the sex, so that will be a nice bonus, all being well. The OB said that it usually takes up to 36 hours but results often come back within 24 hours; although the midwife told us to expect a call some time on Friday, so who knows which it will be. I'm waiting by my phone with bated breath, and I can only hope they will ring today. Because we are on the apple isle, the samples have to be couriered to the mainland, so it may take longer than a day. Either way, I'll report back to let you all know the verdict as soon as I hear.

    Thank you all so much again for your support, advice, and kind words. It helps immensely when you can get in touch with people who understand what you are going through, and I'm eternally grateful. xoxoxo

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    Karamc  (18-04-2013)

  10. #16
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    Hello everyone, I just wanted to let you know that we've just had a call from the clinic midwife confirming that the results are all clear and we are having another little girl! We are very relieved and grateful. Thank you again for seeing me through the last fortnight and being so supportive. X

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    giveitago  (09-05-2016)

  12. #17
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    What a relief! I am so happy for you!

    Now hopefully you can relax and enjoy the rest of your pregnancy! Congratulations on your little girl

  13. #18
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    Great news rose87 so very happy for you and you family.
    Enjoy the rest of the pregnancy now! Glad you got the results so quickly too, hats off to those pathologists!
    all the best for you and your growing girl
    xx

  14. #19
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    Woohoo!! I'm so very happy for you. Wishing you all the best for the rest of your pregnancy.

  15. #20
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    Congratulations I am so glad to hear that other people get good results. I hope that the rest of your pregnancy is stress free and you get to hold your little girl in your arms. I am now pregnant again and also expecting a little girl. This pregnancy is better as the baby is huge rather than fading away each scan. I guess my other little girl just wasn't meant to be my take home baby. Very best of luck to all of the ladies here. x


 

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